Non sono malato. Ho la fibromialgia.

La lotta con la fibromialgia è che ogni giorno è qualcosa di nuovo. Il mio diario è una battaglia costante su una pista all-terrain; pieno di pericoli, nessuna idea di dove sto andando o di quello che colpirò dopo. Sono in una infinita rotunda di sintomi.

Ogni ostacolo è calcolato per evitare il rischio, ma il risultato non è mai prevedibile, non importa quanto io provi. Le variabili non contano.

Ci sono molti sintomi della fibromialgia, tra cui:

  1. dolore muscolare cronico, spasmi muscolari o senso di oppressione
  2. grave affaticamento cronico e diminuzione di energia
  3. insonnia o svegliarsi sentendosi stanco come quando andava a dormire
  4. rigidità al risveglio o dopo un soggiorno in una posizione per troppo tempo
  5. difficoltà a ricordare, concentrandosi , ed eseguire attività mentali semplice ( “fibroidea nebbia”)
  6. dolore addominale, gonfiore, nausea e stipsi senza problemi gastrointestinali di informativa
  7. tensione cronica o emicrania
  8. sensibilità a uno o più dei seguenti: odori, rumore, luci, farmaci, alcuni alimenti e freddo
    di ansia e depressione
  9. Intorpidimento o formicolio al viso, braccia, mani, gambe o piedi
  10. Una sensazione di gonfiore (senza gonfiore effettivo) nelle mani e piedi
  11. mascella e tenerezza facciale

Costochondritis, infiammazione della cartilagine che connette una nervatura per la sterno
sta procedendo. Stanno anche meglio. Come allodinia, una maggiore sensibilità al tatto, con conseguente dolore cose che normalmente sarebbe non causare disagio, come ad esempio indossare abiti.

Per me, lotto con dolore e stanchezza. Singolo. Giorno. Non è solo un po ‘mal di testa o sono stanco. Questo è dolore per tutto il corpo come se avessi l’influenza. Questa è fatica come se non avessi dormito in 48 ore. Questo è ogni giorno Questa è la mia costante linea di base. La mia normale esistenza sei in una giornata di malattia. O sbornia. Questo è il modo in cui vivo.

Per riferimento, ho 27 anni, 5’1 “e 120 sterline. Sembro in salute

Ma gli altri sintomi sono la parte più difficile. Passano attraverso il mio corpo come se fosse un flipper; posizione e gravità che cambiano costantemente, spesso in acuti e rapidi dolori, così veloci che riesco a malapena a riprendere fiato prima che si muova. Durata regolare per ore alla volta; dove le mie gambe si sentono come se avessero pesi di 100 libbre legati a loro.

Di solito durante l’esecuzione mie commissioni di base, io mi ha colpito come una tonnellata di mattoni che diventano il sudore, quindi sto surriscaldamento così difficile devo “fare una pausa”, perché a comprare di più la carta igienica in Target è troppo difficile . Otto ore di lavoro nel mio lavoro a tempo pieno mi sembrano di correre una maratona.

L’elenco potrebbe continuare all’infinito. Mi sono rassegnato a dire: “Non mi sento bene, grazie per averlo chiesto”, invece di cercare di spiegare una delle innumerevoli malattie che sento in questo momento.

A proposito di momenti, è tutto ciò che posso pensare. Proprio in questo momento di dolore esisto, a letto cercando di distrarmi da “lui” (il dolore). Domani, nei momenti prima, durante e dopo il mio viaggio in pubblico.

Tra tre settimane, al momento del viaggio di 30 ore, mi imbarco. Come reagirò? Come chiamerai (questo è il modo in cui descriviamo “quando sh * t colpisce il ventilatore”)? Quanto durerà il transito dalla X alla Z? Una volta arrivato al posto di Z, dovrò partire in qualsiasi momento? Quanta energia devo usare nelle otto ore che dovrei lavorare?

Alzati ogni 45 minuti per ridurre il livello del dolore del cinque percento. Cammina almeno 4000 passi per ridurre il livello del dolore del 10 percento. Riposa dopo 20 minuti di cammino. Essere a letto per almeno nove ore per funzionare a circa il 75 per cento il giorno successivo.

Tutto è un calcolo perché c’è un errore nel mio database.

Non c’è più alcun motivo nel mio codice.

Tutto è sconosciuto

Al lavoro, ritengo che dire a un collega di più sul perché fosse “malato” ieri. Chiese, curiosamente, se avesse scoperto cosa mi faceva star male. Ho risposto scherzosamente: “A volte mi ammalo.” Ma la parte di me che desidera ardentemente il supporto e l’empatia mi ha implorato di dire la verità. La cosa sulla fibromialgia è che non è come le altre cose. La cosa sulla fibromialgia è che nessuno sa cosa sia.

La risposta più comune è una conferma cancellata due volte – che hanno una conoscenza (spesso femminile) o la loro “mamma amica”. La conversazione si interrompe. Non è come quella dannata influenza. Le persone sanno di cosa si tratta. Le persone lo capiscono. Sei malato

La fibromialgia è una classe a sé stante, ed è diversa per tutti.

Il mio discorso di ascensore di solito è un po ‘come questo: “Ho un disturbo del sistema nervoso centrale che causa diffuso dolore cronico e stanchezza.” Cerco di farlo sembrare cattivo, perché è cattivo.

Perché voglio che le persone prestino attenzione.

Voglio che le persone sappiano della fibromialgia e cosa fa; il potere che deve distruggere vite mentre si nasconde nell’ombra. Si traveste da altre malattie, quindi sottoponiamo una serie di test che la nostra assicurazione non coprirà. Questo trasforma i miei amici e la mia famiglia in scettici. Fa pensare (e farmi sentire) come se fossi un bugiardo, una persona finta e pigra. Prova a prendere il mio lavoro, i miei rapporti, il mio amore e la passione per la vita.

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